I’ve finally admitted to myself that even though we are out of the NICU, part of me is still in the NICU. That’s why I keep in touch with Nathan’s primary nurses, it’s why I write for PreemieBabies101, and it’s why I go to NICU reunions. It keeps me tethered to the fragile beginnings of my son’s life so that I don’t forget where we were and where we are going. It feels not quite so lonely to reconnect to the people who were there at his side in the beginning.
It’s NICU reunion season. Last weekend we went to the Dell Children’s Hospital NICU reunion. At first we felt lost. We recognized no one and felt out-of-place. But shortly after that we started seeing some of the amazing people who became our extended family for two months and took care of little Nathan.
The first person we saw was a charge nurse named Natalie. She was Nathan’s primary night nurse. She would send me texts at night right before I went to bed so that I knew Nafe was okay. I especially remember the one she sent on July 4th because it wasn’t long after he had one of his big breathing (or lack thereof) episodes. I got her text and it gently eased the guilt I felt over going to watch fireworks with the rest of my family.
We saw T, short for Teresa. She was also a regular nurse of Nathan’s and one of our favorites. I remember the morning after his surgery my husband came to wake me in the parent room and said, “He has T today!” We were thrilled because she advocated for him so well. She was the perfect mix of bull dog and mother hen and exactly who he needed during his recovery.
Then we saw Dr. Michael who will always and forever be one of my favorite doctors. He welcomed us at Nathan’s room about 10 minutes after he was transferred over to Dell. Right away he said, “Let’s sit down in another room and chat.” Over an hour later with lots of tear filled, snotty nose tissues on our laps, we finally had a plan going forward. The specialists started rolling in and we were on a mission to get out of the hospital. I resisted transferring Nathan from his delivery hospital but Dr. Michael confirmed why we were there and walked us through several hard decisions.
Each time we run into him he says, “Well done.” Last weekend was no different. “Well done.” An interesting statement. It’s an interesting statement because this isn’t something that I want to do well. It’s not something I want to do at all. I don’t want to navigate the medical mysteries of a complex kiddo. I don’t want to worry and wonder over the length of his life. I don’t want to learn how to advocate for a child with disabilities basically everywhere I go. I don’t want the daily hassle of living with a child who can’t do things on a typical developmental timeframe.
He also said, “It doesn’t get any worse than this. You’ve handled it all with class.” And therein lies the affirming part. The part that I need to hear from someone who was there at the beginning. “It doesn’t get any worse than this.” NICU folks understand life differently like we do. The beginning of life is supposed to be just that, the beginning. Everything about a typical brand new baby is perfect. Their skin, their innocent movements, trusting cuddles, they have their whole great big lives ahead of them. The beginning of life is not supposed to be spent fighting death and struggling through basic life functions like breathing and eating and sleeping. When a new life starts out so imperfect and interrupted by a NICU stay, you realize the gift of life in an even larger context.
So last weekend we went back to where it all started. As we visited with different staff, toured the healing gardens, watched Mac participate in all of the kid friendly activities, I remembered where we were. Remembering gave me clarity on where we are going. Cri du Chat syndrome is still not something that I would choose for my son, but since God chose it for him, there is good in it somewhere. I will daily try to do my role as Nathan’s mom well. What I really long for is, not Dr. Michael but, the God of the universe saying “Well done” to me one day.
So thank you dear NICU family for helping us remember where we were and where we are going. We’ll see you again next year.
His master replied, “Well done, good and faithful servant. You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness.” – Mac 25:21
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